Husband with POEMS Syndrome

My husband was diagnosed with Casttleman on 2018 and 2019 with POEMS, He had a Stem cells trasplant. He was fine but on April of 2022 He start gwtting the Kappa Chain high, His oncologist SAYS " your tests results are NORMAL" but I don't stop insisting for more studies and tests. Finally He got an appointment again with the Stonford Specialist and she is going to start treatment again. His neuropathy is getting worse, he has to walk with a walker. The POEMS not have a cure but the stem cells trasplant make slow down the desease. I'm his caregiver and is hard to see him getting worse in his walk and managing his balance. It is very hard for the hall family. Casseth02 God bless you and give you the strength to keep going. 🙏

Welcome to Connect, @consol. I’m so sorry to hear that your husband’s neuropathy is getting worse even after the stem cell transplant. That’s a lot to go through… Did your husband have a transplant using his own cells or was this with a donor? What type of treatment will he be starting for his POEMS?

Hi Lori. My husband had a Auto trasplant and He donated for another. The transplant was part of the treatment for his Poems, but the Specialist said the remaining of the disease is causing his neuropathy getting worse. He is in very good condition comparing with another patient with the same disease..Doctors said. He is going to start with the radiation, I believe and we'll see what happens next.

I’m sure this is all so frustrating for your husband…and for you, knowing he’s so uncomfortable. I hope this next treatment helps him get back to some normalcy. I had some issues that had me bedridden for some time. I also had lost the feeling in both legs so it took time to get back to walking without support. One thing that helped me significantly to get my balance back when walking was working with a physical therapist to strengthen my core muscles! I wonder if that might help your husband.
Wishing him all the best with his upcoming change in treatment. Will you let me how now he does please?

@amandaa@sandy70yikes My husband, Eric, was diagnosed in January with POEMS after more than two years of trying to find causes for very diverse symptoms and growing weaker every day. He went from 170 lbs. down to 140 and by this past December was unable to walk without a walker and needed help with all his ADL. He began weekly treatment with Daratumumab and Hyaluronidase on Feb. 6. Since that time I have noticed very small signs of improvement and his blood markers have improved, but the improvements are so small that he thinks I’m just making them up.

The oncologist wants to add another drug to his chemo cocktail, but she feels he is too fragile to tolerate it now, so despite his lack of appetite, I am trying to fill him with as many calories as possible to build his strength. He is constantly tired and would prefer to sleep all day. I believe part of this is depression. His lack of energy and inability to do much of anything on his own means that he lacks a sense of purpose and constantly chastises himself for being lazy. (Yes, he does have a therapist and is on an anti-depressant.)

I keep trying to find a support group he could attend to at least be able to talk with others in similar circumstances even if they don’t have his exact disease. So far nothing.